Preliminary Literature Review
Enhancing Community Participation for People with Disabilities
With a greater frequency than in any other time in history, people with chronic diseases, serious injury, and significant birth structural and functional differences are surviving in greater numbers. They are living with varying degrees of self-sufficiency, satisfaction, and social support. An estimated 19.4 percent of non-institutionalized civilians in the United States, totaling 48.9 million people, have a disability. Almost half of these people (an estimated 24.1 million people) can be considered to have a severe disability (Kraus, Stoddard, & Gilmartin, 1996).
Over 47 million individuals receive Medicaid coverage to pay for their health care services, costing roughly $212 billion during the year 2002. Of the individuals who receive Medicaid, 17% have a disability (over 8 million individuals), yet individuals with disabilities account for 44% ($93 billion) of total Medicaid expenses (U.S. Department of Health and Human Services, accessed online 4/16/03). A Harris poll of people with disabilities over 50 years old found that over one-third postponed receiving health care because they could not pay for services (Harris, 1998).
Given the frequency of health problems and high use of health services, a pressing need exists for community-based programs for people with disabilities (U.S. Department of Health and Human Services, 2005). The success of prevention programs has gained considerable attention for potential benefits to the general population in terms of lifestyles, quality of life, and economic benefits (Clayton, Rogers & Stuifbergen, 1999; Watt, Verma & Flynn, 1998). Because of their health impairments, people with disabilities may require programs and services that address unique issues relevant to their disability (DeJong, 1995; Kniepmann, 1997; Marge, 1988; Patrick, 1997; Patrick, Richardson, Starks, Rose, & Kinne, 1997; Rimmer, 1999; Stuifbergen & Rogers, 1997, Froehlich-Grobe & White, 2004) and may not find such information in programs offered to the general population.
Course development designed to meet the health needs of persons with disabilities is critical since this population is at increased risk for secondary conditions that range from pressure sores; to psychosocial adjustment, such as depression; to environmental issues, such as access problems (Seekins, Clay, & Ravesloot, 1994). These secondary conditions can impose high treatment costs that could be prevented using education and training sessions (Pelletier, 1991). For the programs that are offered, often a gap in program research exists. Rarely is researched conducted on the effects of program on the participation of participants.
Improved intervention approaches and guidelines that help to remove or reduce barriers to full community integration and participation for individuals with disabilities.
The NIDRR Long Range Plan (2006) includes a strong emphasis on systematic evaluation of interventions designed to improve community participation by people with disabilities. Specifically, the NIDRR LRP states that research may include evaluation of specific participation-promoting programs, interventions and products, as well as development of methods, measures and theories to enhance the scientific rigor of these evaluations. NIDRR sponsors research to improve knowledge of individual- and societal-level factors that may serve as barriers to, or facilitators of, participation among all people with disabilities (NIDRR LRP, 2006).
A key component of getting out, remaining out, and never getting into institutional living situations is receiving appropriate services. As stated in the New Freedom Initiative, “Significant challenges remain for Americans with disabilities in realizing the dream of equal access to full participation in American society.” (NFI, 2002) Part of this challenge for people with disabilities is to know what services are needed and how to locate these services. Most often, services are offered in hospitals or rehabilitation programs. However, once people leave this setting, they have great difficulty finding and learning how to use the scarce resources located in community settings. In many instances, centers for independent living (CILs) offer the services needed to fill this void. However, programs offered through independent living centers vary greatly across centers.
Clayton, D., Rogers, S., & Stuifbergen, A. (1999) Answers to unasked questions: writing in the margins. Research in Nursing & Health, 22, 512-522.
DeJong, G. (1995). Preventing and managing secondary conditions in an era managed care. Presentation to conference on Secondary conditions and Aging with a Disability, Department of Physical Medicine and Rehabilitation, SUNY Health Science Center at Syracuse: Syracuse, NY.
Froehlich-Grobe K., & White, G. W. (2004). Promoting physical activity among women with mobility impairments: a randomized controlled trial to assess a home- and community-based intervention. Archives of Physical Medicine and Rehabilitation, 85, 640-648.
Harris Poll #56: Americans with disabilities still pervasively disadvantaged on a broad range of key indicators. (1998, October 14). The Wall Street Journal.
Kniepmann, K. (1997). Prevention of disability and maintenance of health. In C. H. Christiansen & C. M. Baum. (Eds.),Occupational therapy: Enabling function & well-being. 2nd ed. (pp 531-555). Thorofare, NJ: SLACK Incorporated.
Kraus, L. E., Stoddard, S., & Gilmartin, S. (1996). Chartbook on disability in the United States. Washington, D.C: National Institute on Disability and Rehabilitation Research, 64.
Marge, M. (1988). Health promotion of persons with disabilities: Moving beyond rehabilitation. American Journal of Health Promotion, 2, 29-35.
(2002). New Freedom Initiative: A progress report.
National Institute on Disability and Rehabilitation Research. (2005). Notice of proposed long range plan for fiscal years 2005-2009. Federal Register, 70 (14), 43522 - 43555.
Patrick, D. L. (1997). Finding health-related quality of life outcomes sensitive to health-care organization and delivery. Medical Care, 35(11 Suppl), S49-S57.
Patrick, D. L.,Richardson, M., Starks, H. E., Rose, M. A., & Kinne, S. (1997). Rethinking prevention for people with disabilities II. A framework for designing interventions. American Journal of Health Promotion, 11(4), 261-263.
Rimmer, J.H. (1999). Health promotion for people with disabilities: The emerging paradigm shift from disability prevention to prevention of secondary conditions. Physical Therapy, 79 (5), 495-502.
Seekins, T., Clay, J., & Ravesloot, C. (1994). A descriptive study of secondary conditions reported by a population of adults with physical disabilities served by three independent living centers in a rural state. Journal of Rehabilitation, 60(2), 47-51.